Scenes from a heart surgery

This is absolutely wonderful, and absolutely not for the squeamish.

Defective Heart Girl Problems is a blog where physicist Summer Ash has blogged her experience with finding out that she has a defective heart valve and getting treatment to deal with that defect. The image above shows her scar from her recent surgery.

Ash went through surgery to repair her heart on July 18th. Here's how she explains the problem:

I recently discovered that I was born with a congenital heart defect known as bicuspid aortic valve disease (BAVD). It’s not a disease, per se, so much as a defect. Most people (roughly 99% of them) are born with a tricuspid aortic valve. I am the lucky 1% born with a bicuspid valve. (I am the 1%!)

As a bonus, being born with this genetic mutation also means the lower part of my aorta, the part that connects to the aortic valve and helps channel the flow of oxygenated blood into the arteries, has less fibrillin-1 – a protein that helps to maintain the structural integrity of the aortic wall. This means that my aorta is prone to “stretching out” and even the normal stress of blood flow coming out of the heart and being channelled to the rest of the body is enough to cause it to start ballooning outward.

The nominal course of BAVD usually entails the aortic valve calcifying and stiffening later in life (60s – 70s), ending in valve replacement surgery. Some people will also need the root of their aortas replaced at this time, some may not. My problem is that my aorta is jumping the gun; it’s already stretched out to the point where it’s considered an aortic aneurysm. I like to imagine it as a hipster, dilating before it’s cool to do so.

On July 29, she posted the full story of her surgery, including photos of her visible heart and really clear, well-written explanations that describe what her surgeon's did while they were rooting around in her chest cavity. It's graphic. And it's not for everybody. But it's also extremely powerful storytelling about both medical science, and the experience of having something go wrong with your body that you can't control. Highly recommended.

Read Summer Ash's description of her surgery

(Via Jennifer Ouellette)


  1. Nice story – she certainly seems upbeat about her situation.

    I wonder who took the pictures and why the hospital allowed it.  Not to be cynical, but I would think that most hospitals would see this as a liability risk…

    1. i just had surgery a week and a half ago, and the surgeon took photos to show why he removed what he removed.  it’s not only normal, it’s almost expected.

  2. I had a customer, whose wife had a mechanical (ball-bearing-type, I guess) heart valve.  You could hear it click-click-click…  She didn’t hear it any more. 

    I suspect that she was worthless at playing poker.  Or any game where you might have to bluff.

  3. That’s very impressive. I had a very similar surgery for the same problem a couple of years ago, but I certainly didn’t manage to talk the doctors into sending me home with souviner photos!

    I wish I’d had the writing talent and the openness to even consider a weblog like that one. It seems like the perfect way to handle “Don’t want people to see me scared. Don’t want people to see me squicked. But boy, lookit, everyone, how COOL this stuff all is!” The grace and skill she shows writing this, at a time when she’s still probably not allowed to walk all the way ’round the block, is just amazing.

    1.  FTFA – she had her aortic root replaced with a dacron graft  (ie, the bottom section of her aorta, from the valve to the arch, was replaced with a synthetic aorta).  The bicuspid aortic valve contributed to an aortic aneurysm, but was in and of itself healthy.  The valve was not replaced.

  4. You don’t even need a heart any more.

    With two of these (or more): 

    Its off label to install them in place of a heart, but you can have several installed to assist your heart.

    If you heart stops beating… you wont notice… if you go to a new doctors office, they might freak out since you don’t have a pulse any more.

    The hospital I work in routinely puts one in as a heart assist.  They would like to install them as heart replacements.  They are much easier on people than all of the anti rejection drugs.

  5. Will there be another story later in the year where her friends and family are dancing on street corners to pay for the hospital bills?

  6. I´m one of the lucky 1% as well… :) I wonder why her aortic valve wasn´t replaced as it was done at my operation. Although it´s quite a bloody treatment the recovery was just a charm. I didn´t expect to leave the hospital after less then a week, but I did. Just unbelievable.

  7. I had a Titanium mytrol valve installed in 2003..I was scar is hardly noticable but I think I really lucked out..I had the best surgeon in Scottsdale. This was covered 100% by the then generous medicaid program in Az then..pre teabaggers and Jan Brewer..I should send here a scar is really not an looks like that at first.

  8. WOW.  When it comes to stories about “What I Did on my ‘Summer’ Vacation” (sorry) – you win, hands down!  Congratulations on your successful procedure; I’ve followed your work on the MaddowBlog with pleasure, and I’m so glad to learn you’re doing well.


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